Comments for blog.limedaley.com/post/pain-and-poop

Comment #3292

2024-03-03T15:30:22Z

I've asked about adding more liver drugs and the answer is that the three she is on for that since she got here is all they can do.

Comment #3291

2024-03-03T13:11:13Z

I haven't heard anyone say the level of severity, but it seems they expect it to heal without a transplant. Her retained fluids were less yesterday than the day before.

Regarding suppressing the immune system - that's the delicate balance between letting it grow and avoiding GVHD. For JMML, they even want a certain level of GVHD.

Comment #3290

2024-03-02T12:40:40Z

Have they said how severe her VOD is?

"Most people have mild to moderate VOD. Some people recover without treatment within a few weeks or after they get more of the drugs given to suppress the immune system." (Not that suppressing her baby immune system seems like such a good idea....)

"Sometimes VOD is severe and can lead to liver failure. If this happens, a liver transplant may be needed." (Something for urgent prayer!)

Comment #3289

2024-03-02T12:01:18Z

If it hasn't been said already, VOD, veno-occlusive-disease has been confirmed.

Comment #3288

2024-02-28T20:39:37Z

I love being able to pray for specific issues going on in your health journey with Grace. Thank you for keeping your prayer warriors posted. I include in every prayer, Heather, that you will feel the extra health and energy renewal you need every day.

Comment #3287

2024-02-28T16:15:35Z

I looked up VOD, which does not mean video on demand, for those who are curious. Having done so, I decided there was no point in wading through all those big words when we don't even know if she has it or not.

Comment #3286

2024-02-28T15:49:21Z

Wonderful to see those smiles!!

Heather and Jon you are amazing. The way you are keeping all the kids involved and engaged, taking care of everyone's hearts. Takes energy. We were in the ER for 6 hrs recently and I just kept thinking of you guys and how draining the hospital environment is. I'll say it again, you're amazing. And noticing all the cause and effect with the pain meds. Praise to our Great God. Hallelujah for maybe engraftment! Thank you for these posts that help us with timely and specific prayers (though we know He is outside time it is nice to somewhat walk in time together) We love you.

Comment #3285

2024-02-28T14:22:13Z

Glad to see her ANC going up! I hope they can resolve the belly issue. Hugs to all!

Comment #3284

2024-02-28T13:37:35Z

I just got back from rounds. They are happy with her stool output decreasing, and were going to propose starting feeds again. However, because of the distended belly and the pain, they are going to do some more investigation. They will do an ultrasound of her abdomen. They will up her morphine. She has been having higher blood pressure, but it might be from the pain. Also contributing to her pain might be bone pain from engraftment (I just heard about this from an adult friend - it's really a thing.) They need to consider if these are symptoms of VOD, which she has been getting preventative meds for, because it's common. This is a liver vein thing. They aren't worried at this point, but they will be testing and observing.

Comment #3283

2024-02-28T13:22:14Z

Praying that engraftment and gut healing would happen soon! It's amazing to watch how time and space aren't hindering all these sibling relationships. I know you all just ache to be together again. Praying that will also happen soon. Meantime. He's holding you in His arms and singing over you until His purpose is accomplished. Sending lots of love.